For fifty years I lived with obesity and knew “diet and exercise” was not a successful solution! I spent half a century of desperately trying to find medical help. Finally I was able to make an appointment at one of the premier medical clinics in the country. There, at the age of 70, I heard the following words that radically changed my life.
“Carole, your condition is not your fault. You were born with Lipedema. The radiation treatments you received which saved your life, unfortunately left you with Lymphedema. Twenty five years ago we were not as knowledgeable about the ongoing effects of radiation on the body. Lymphedema is one of the resulting side effects. NO amount of diet or exercise will touch the type of self-replicating fat cells in your body”.
The Enemy has Names – Lymphedema and Lipedema
Lymphedema is coded by Medicare and there is partial coverage for treatment in the form of a home pumping system that will help to pump the lymphatic system reducing the fluid in the affected limb. My legs, upper arms and trunk are affected.
Lipedema, unfortunately, is not covered by insurance and the liposuction treatment available, which is the only solution, is considered cosmetic by Medicare. If you Google Lipedema photos you will get a clear picture of how serious the problem is and how far it can go. The frightening medical issues that arise from having lipedema can kill you and there is no cure for this condition, it is an ongoing battle, and you will continue to get bigger without treatment.
Approximately 17 million women in the United States, and approximately 360 million worldwide, suffer from these “fat disorders”.
Hunting the Truth about Lipedima and Lymphedema
I spent five years on the internet looking for the organizations and doctors involved in the research and patient care for these painful and debilitating disorders. I finally made contact with one of the world’s leading experts on lipedema, lymphedema, dercum’s disease, madelungs, and other fat disorders, and was able to secure an appointment, a year out from when I called. I purchased 800 dollars worth of compression garments, and never wore them more than once, because I had no one to show me how to apply them,
I live in an awesome and beautiful part of Wyoming but there are no Doctors in my community who even know about my conditions. I was trying to help myself, but being 80 miles in any direction from knowledgeable medical care makes help almost impossible.
I was very busy during that year,
- watching you tube films of the Doctor,
- reading everything I could find,
- joining my state Lymphedema Association, and
- connecting with the organizations of national prominence.
I was as knowledgeable as I could be by the time I saw the Doctor. I followed her website recommendations for what to eat, what supplements to take to relieve the pain and pressure in my body.
Journey to Victory Over the Fat Disorders
In July of 2018, with the help of my unbelievable support group of friends and family, I made the long ride to Tucson, AZ to meet an amazing Doctor. She diagnosed me with the Lipedema and Lymphedema disorders, adding Dercum’s disease to the list. She laid out a treatment plan that will give me the ability to walk again without a walker.
No beauty pageants are in my future, but I will be able to enjoy all of the experiences of life that I love. I will keep up with
- painful therapy, (akin to putting a body part through a wringer)
- hard repetitive effort, and
- a time consuming regimen of pumping the fluid, exercising,
- using a vibrating machine,
- eating a Keto food plan, and
- taking the recommended supplements.
As part of the regimen, I drive 160 miles round trip every Tuesday, Wednesday and Thursday for 1 hour of treatment. Too much work and effort you say? Look at the photos, and consider carefully the inevitable consequences of your decision. The help is out there and I am happy to share the resources I have found in following posts.